Toward the development of a model of caregiver-specific fear of cancer recurrence: a systematic review

Webb, K. T.; Sharpe, Louise; Butow, Phyllis; Dhillon, Haryana M.; Zachariae, Robert; Tauber, Nina Møller; O’Toole, Mia Skytte; Shaw, Joanne

doi:10.1097/or9.0000000000000082

Cited by 7 publications

(57 citation statements)

References 81 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our findings align with prior literature by highlighting the unique components of caregiver FCR. However, unlike Webb and colleagues, 14 we argue that an overarching sense of personal responsibility is a key driver of caregiver FCR.…”

Section: Discussioncontrasting

confidence: 88%

“…As suggested by Webb and colleagues, 14 caregivers expressed a desire to protect the patient from recurrence and cancer‐related distress. To do so, caregivers were hypervigilant about the patient's health and proactively monitored for signs of a recurrence.…”

Section: Discussionmentioning

confidence: 99%

“…This persistent surveillance aligns with clinical definitions of FCR 26 and may further explain why caregiver fears were frequently triggered by the patient's health. These behaviours also appeared to counterproductively contribute to relational tension, patient agitation and the maintenance of personal concerns 14 …”

Section: Discussionmentioning

confidence: 99%

“…In their systematic review and meta‐synthesis of qualitative studies, Webb and colleagues 14 hypothesised that an overarching fear of losing the patient may drive caregiver fears and the desire to protect. An important caveat to the review findings was that none of the included studies explored caregiver FCR as a primary focus.…”

Section: Introductionmentioning

confidence: 99%

“…3,12,13 Like anxiety and trauma-related disorders, this often prompts maladaptive coping and avoidance; alleviating immediate distress but maintaining cognitively biased cycles of anxiety. 3 However, as suggested by Webb and colleagues, 14 there may be unique aspects of caregiver FCR that are not captured in patient models.…”

mentioning

confidence: 99%

See 4 more Smart Citations

A qualitative exploration of fear of cancer recurrence in caregivers

et al. 2023

Self Cite

View full text Add to dashboard Cite

Objective Fear of cancer recurrence (FCR) is one of the most common unmet needs for cancer patients and caregivers. Yet little is known about the potentially unique nature of caregiver FCR. Our research aimed to address this gap by qualitatively exploring the features and impact of caregiver FCR. Methods Eighteen semi‐structured telephone interviews with cancer caregivers were conducted to explore the content and impact of caregiver fears and worries about cancer recurrence or progression. Data analysis used a Framework Approach. Results Qualitative analysis identified three themes (1) fear of the patient suffering, (2) the need to protect the patient from a recurrence and/or cancer‐related distress, and (3) caregiver's sense of unpreparedness and uncertainty. Underpinning these themes was an overarching sense of personal responsibility for the life of the patient. This overarching theme was identified as a key driver of caregivers' personal and patient‐centred fears. Conclusions Our findings confirm the conceptual differences between patient and caregiver FCR. Future research must therefore acknowledge the unique experiences of caregivers and prioritise the development of empirically driven theoretical models, instruments, and interventions for caregiver FCR.

show abstract

Section: Discussioncontrasting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

mentioning

confidence: 99%

See 3 more Smart Citations

A qualitative exploration of fear of cancer recurrence in caregivers

et al. 2023

Self Cite

View full text Add to dashboard Cite

show abstract

Caregiver fear of cancer recurrence: A systematic review and meta‐analysis of quantitative studies

et al. 2023

Self Cite

View full text Add to dashboard Cite

ObjectiveFear of cancer recurrence (FCR) is reported by both cancer survivors and caregivers however less is known about caregiver FCR. This study aimed to (a) conduct a meta‐analysis to compare survivor and caregiver FCR levels; (b) examine the relationship between caregiver FCR and depression, and anxiety; (c) evaluate psychometric properties of caregiver FCR measures.MethodsCINAHL, Embase, PsychINFO and PubMed were searched for quantitative research examining caregiver FCR. Eligibility criteria included caregivers caring for a survivor with any type of cancer, reporting on caregiver FCR and/or measurement, published in English‐language, peer‐review journals between 1997 and November 2022. The COnsensus‐based Standards for the selection of health status Measurement INstruments (COSMIN) taxonomy was used to evaluate content and psychometric properties. The review was pre‐registered (PROSPERO ID: CRD42020201906).ResultsOf 4297 records screened, 45 met criteria for inclusion. Meta‐analysis revealed that caregivers reported FCR levels as high as FCR amongst survivors, with around 48% of caregivers reporting clinically significant FCR levels. There was a strong correlation between anxiety and depression and medium correlation with survivor FCR. Twelve different instruments were used to measure caregiver FCR. Assessments using the COSMIN taxonomy revealed few instruments had undergone appropriate development and psychometric testing. Only one instrument met 50% or more of the criteria, indicating substantial development or validation components were missing in most.ConclusionsResults suggest FCR is as often a problem for caregivers as it is for survivors. As in survivors, caregiver FCR is associated with more severe depression and anxiety. Caregiver FCR measurement has predominately relied on survivor conceptualisations and unvalidated measures. More caregiver‐specific research is urgently needed.

show abstract

Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study

Webb,

Sharpe,

Russell

et al. 2023

Psycho-Oncology

Self Cite

View full text Add to dashboard Cite

AimAlthough there is growing research exploring survivor fear of cancer recurrence (FCR), little is known about caregiver FCR. To date, examination of caregiver FCR has largely been conducted through the lens of survivor conceptualisations, limiting the development of caregiver‐specific models, measures, and interventions. This study aimed to explore experiences of FCR among caregivers of people with ovarian cancer.MethodsSemi‐structured telephone interviews were conducted with caregivers of people with ovarian cancer. Participants, recruited through Ovarian Cancer Australia, also completed an online survey collecting participant and patient demographic characteristics, information about the survivor's disease and caregiver levels of FCR using the Fear of Cancer Recurrence Inventory (Caregiver) (FCRI‐c). Qualitative interviews explored caregiver fears, how fears and concerns were experienced and the frequency and timing of FCR. Thematic analysis using a Framework Approach was used to analyse the results.ResultsTwenty‐four caregivers (54% male) participated in an interview. Most caregivers were providing care for their partner (n = 14). Thematic analysis identified four inter‐related themes and associated sub‐themes: (1) Fear and uncertainty; (2) Liminality; (3) Hopelessness and (4) Caregiver's protection of the person and self (caregiver's role as protector). Underpinning these themes was an overarching fear of one's family member dying.ConclusionsCaregivers supporting people with ovarian cancer experience worries and concerns related to cancer recurrence or progression. These experiences are conceptually different to survivor experiences. Fear of one's family member dying, and the dual nature of caregiver protection/self‐protection mean it is imperative that interventions are tailored specifically to caregiver needs. Future research facilitating the development of appropriate measures and interventions is essential to reduce caregiver FCR.

show abstract

Toward the development of a model of caregiver-specific fear of cancer recurrence: a systematic review

Abstract: Supplemental Digital Content is Available in the Text.

Cited by 7 publications

References 81 publications

A qualitative exploration of fear of cancer recurrence in caregivers

A qualitative exploration of fear of cancer recurrence in caregivers

Caregiver fear of cancer recurrence: A systematic review and meta‐analysis of quantitative studies

Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study

Contact Info

Product

Resources

About